A blessing and a curse

Word Girl

Stella is now 6 and a huge “Word Girl” fan, as reflected in her recent artwork.

Well, hello there! First I want to apologize for not getting back to those of you who have reached out over the past couple of years. I’m feeling ready to re-engage a bit with the blog, and share more of Stella’s progress and our family journey. I hope to hear from you, too.

For now, I wanted to help spread the word about an amazing Oscar-winning documentary short. “Our Curse” was created in Poland by little Leo’s rad parents. I was in awe of how this new mother and father stuck together emotionally through the trials of their child’s life-threatening condition. I also felt the barely-kept-togetherness of the moment where they replace baby Leo’s breathing tube, as in many ways it so closely resembled the many times we replaced Stella’s NG tube. No doubt other parents of children with tubes or vision issues and other challenges will appreciate this work of art and love and honesty.  Just in general, the film is raw and beautiful. “Our Curse” is a blessing, as I suspect it will help many families feel a bit less alone, and a touch more hopeful.

The movie (available in full on The New York Times’ website):

Our Curse

The blog (where you can see how Leo is doing):

LEOBLOG

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About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
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One Response to A blessing and a curse

  1. jk7d says:

    Hi,

    I just wanted to give you words of encouragement. My 24 mth old son is starting VT for esotropia now and I can relate to all of the emotions in your posts. In our personal case, I think it is key to not be results oriented and to expect a marathon instead of sprint to a cure….at least that’s what I mumble to myself whenever I shell out bucks for therapy of eye doctor visits. In any case, the therapy you have described in your posts has at the very least built a foundation for your daughter’s future cure imho. I live in Korea and therapists are few and far between and very inexperienced. However, the one I have settled on, agreed to prescribe 30 diopter prism glasses which we will use at home for 1-3 hours daily. This is a very aggressive form of treatment which I encouraged the therapist to do. I read in your posts that your daughter wears them in the office during her visits, why not ask the therapist to make you a pair? I know the cost can be high…you quoted over 1k, my son’s Zeiss prism lenses are “only” about $400. In any case, just wanted you to not get complacent or stagnant in your fight for your daughter’s vision and future quality of life. Keep on keeping on! Your blog has been gold to many people. Chin up Stella’s mom, CHIN UP!

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